The Meaningful Involvement of People with HIV/AIDS (MIPA): The Participatory Praxis Approach to Community Engagement on HIV Surveillance

Abstract

The Meaningful Involvement of People with HIV/AIDS (MIPA) has been at the core of the HIV response since the beginning of the HIV epidemic. In this study, we compare two community engagement activities concerned with molecular HIV surveillance (MHS) in the United States: one governmental and one community-led. We examine the consultative aspects of each one, especially as they relate to people living with HIV. We point to the community-based effort—which used a participatory praxis approach—as an example of MIPA. We derive two best practice principles from this research from the field.

Advancing Dialogue About Consent and Molecular HIV Surveillance in the United States: Four Proposals Following a Federal Advisory Panel's Call for Major Reforms

“…These programs of research can also extend to other issues raised by HIV stakeholders during the MHS/CDR controversy, such as building stronger data security standards to ensure that HIV data are adequately protected and not improperly disclosed to law enforcement or other inappropriate parties (e.g., immigration agencies) 36,37 . As these efforts proceed, it will be vital to prioritize the Meaningful Involvement of People Living with HIV and AIDS, as has long been called for by networks of people living with HIV and other advocates 12,38 . Whereas the CDC can focus on funding health departments, AHRQ and NIH can mainly fund academic researchers.…”

“…PACHA has called on the CDC to “[r]equire jurisdictions that implement MHS activities receive federal funds to establish and maintain a Community Advisory Board specifically focused on MHS/CDR, the membership of which includes a majority of people living with HIV.” 1 The principles of the Meaningful Involvement of People Living with HIV and AIDS have also been invoked by advocates during the MHS/CDR controversy 9,10,12 . Other examples of US domestic HIV advisory bodies that require representation from people living with HIV include Ryan White Planning Councils, HIV Integrated Planning Groups, 41 and the de facto requirement that advisory boards be part of HIV clinical trials.…”

“…Following outcry about MHS/CDR by networks of people living with HIV over concerns about program activities, the practice has been called into question and become controversial. Concerns expressed by advocates, ethicists, and scholars of HIV surveillance have included a lack of informed consent in HIV surveillance, issues related to bodily autonomy regarding the repurposing of clinical laboratory data for public health purposes, the potential to worsen institutionalized forms of racism in the United States through extracting data from disproportionately affected communities of color, a lack of demonstrated benefit, and how CDR might intersect with HIV criminalization 9–12 . 2018–2023 has seen protests, comments sent to federal agencies, concern from some health department staff, 1 calls for a moratorium on MHS/CDR, and debates in the public health, policy, and ethics literatures to which we have contributed 9,10,13–21 .…”

Ending the HIV Epidemic: Identifying Barriers and Facilitators to Implement Molecular HIV Surveillance to Develop Real-Time Cluster Detection and Response Interventions for Local Communities

“…Community engagement around MHS-related activities has largely been left to individual health departments, but a centralized approach to disseminating MHS-related information and promoting equitable community engagement to all stakeholders may be beneficial, including those within the field of public health [ 17 ]. Approaches that center on meaningful community involvement will be crucial to alleviating these concerns and thus improving the success of CDR [ 17 , 29 ].…”

Pulmonary tuberculosis risks and challenges

“…Although TB was once one of the leading causes of death in the U.S., the disease has significantly declined over the last several decades. According to the National Center for Health Statistics, 7,174 Americans were diagnosed with TB disease in 2020 [41]. It is estimated that in 2020, over 450,000 people will develop active TB disease in the United States and approximately 25,000 people will die from the disease [16].…”